Will studies in 2011 be enough to decide validity of CCSVI theory?

Here is the link to the CTV (Canadian Press) story for which I (among others) was interviewed before Christmas: CTV story.  Personally, I don't think that there will be enough evidence coming out from studies in this next year to make a difference, but I hope that I'm wrong for the sake of people who are pinning great hope on CCSVI treatment.

Oh, and here is one of the pictures of me that ran with the original CP story: CP photo. Interestingly, the long caption on the photo makes it sound like I was one of those who had a negative experience with the treatment, whereas the story itself made it clear that was not the case.

Chiropractic and neurodegenerative diseases

My friend Shelley has sent me the link to a blog of a chiropractic doctor who is now retired but who has spent many decades studying the possible anatomical causes of Alzheimer, Parkinson's and MS.  He has written some articles on the matter and, most recently, a book on his findings and theories (The Downside of Upright Posture: The Anatomical Causes of Alzheimer’s, Parkinson’s and Multiple Sclerosis, Two Harbours Press).  In his blog, Dr. Flanagan also discusses possible relationships between his findings and the CCSVI theory.

I find this interesting, in part because my MS symptoms started four months after a severe body-surfing injury to my shoulder and neck in Thailand... and many others with MS seem to have similar stories.

Wishing everyone a Happy New Year!

My New Years wishes:

1. For those who have been liberated, I wish continuing improvement or at least an arrest of the progression of their disease.
2. For those who wish to be liberated, I wish you get a place in a short line and that, by the time you get to be treated, many of the uncertainties concerning the best way to do the procedure are clarified, that you have a stress and problem-free treatment and that you have improvements in your symptoms.
3. For health care providers and governments, I wish them insight and compassion to work with MSers to find ways to improve the quality of their lives.

For my part, I don't need any Christmas gifts because I have been treated, the treatment seems to be holding, and the quality of my life continues to improve... who could wish for anything more?

Thoughtful Argument

Here is a posting from EJC of the UK on TiMS that was part of a discussion concerning how CCSVI and its treatment should be viewed:

CCSVI is the beginning of the understanding of what is currently defined as "MS".

Over the next decade what we understand as MS is likely to be broken down into a number of similar but significantly differing conditions that lead to roughly the same end result, albeit in differing degrees.

The medical establishment will gradually start to unravel what they've not been able to understand for years.

CCSVI, or it's theory is the trigger to unlocking this understanding, it is genuinely a once in a lifetime medical breakthrough with regard to the understanding of MS.

However what MS sufferers don't have is the time to sit and wait for the medical community to compile all the evidence in a long and drawn out manner that could take 10 - 20 years. During which time many people may die due to complications of their condition.

Increasing anecdotal evidence exists the liberation treatment improves the quality of life of a large enough percentage of people who choose to undertake it that makes it worth contemplating.

For want of a better phrase "It's worth a shot".

No one is being press ganged or conned into this treatment, it is a free choice that we take in the full knowledge that the people undertaking this procedure are still learning it and that the long term effects have yet to be quantified.

We read as much as we can, ask as many prudent questions as we can and those of us already booked into the system will report as much as we can in an effort to get the information out into the big wide world.

Every day I watch Emma struggle with the normal things in life, over months and years she is gradually declining. She does not have the time to sit tight and wait for all the i's to be dotted and the t's crossed, she needs whatever help she can get.

This will have cost us around £8,000 to £10,000 when it's all done. Fortunately I can afford that without having to borrow money and trust me I've done far more dumb things with £10,000 than a private medical procedure.

I'm spending this money for Emma in a hope that it improves her quality of life, if this is a "Cure" for newly diagnosed patients then great - but it will never cure Emma, too much damage has been done. But if it improves her quality of life and arrests progression, then in my mind it's worth £100,000.

Some people are too far along in their progression that "choice" is no longer an option - having liberation is almost a necessity as so far everything else they've been offered has failed in almost every way.

Inge gets fixed a second time!

Here is my Dutch friend Inge's report on her second procedure, this time in Belgium:

Hi Ted!

Everything went very well. Dr. Beelen managed to get half of the old stent out (I have it here in a little container, swimming around..It looks like a shrimp in barbed wire...Some of the scar tissue came with it, so it looks rather dodgy).

He couldn't get the upper part out, because that was grown into my vessel (wall? I do not know the word). He placed a new, covered stent in the old one, and that is sitting tight there. Everything flows again. My neck is till a little sore, but that will pass.

On the left side he ballooned a 40-50% narrowing. And he completely opened up my azygos (100% narrowing). I am especially glad with the latter, as I understand that the azygos is quite important for mobility. I already experience some slight improvements:

• I can flex my right foot when lying in bed: before my leg felt like a rock and I couldn't move it.
• I can lift my right foot better: instead of dragging, I can make the beginning of a step.
• I stand more stable and more powerful (especially under the shower)
• I feel a sensation in my right hand: it feels less numb
• I can pee more easily
• it seems that the spasms are less

So impressive hey?

I am very very glad I had the 2nd surgery.

The interview went well: do you know when it is published?

We'll email! Take care

X

Inge

Know what jugular/azygos veins look like? Check out this site

It's still beta and not super user-friendly yet, but it gives a wonderful lesson in anatomy, including showing what the azygos vein really looks like: Google Body Browser

Very neat, and you can use search to find any part of the anatomy.  It may only work properly with the Google Chrome browser, though.

A CCSVI Christmas Carol Story

A very nice story of CCSVI treatment success just in time for Christmas (copied from a TiMS posting):

I am an attorney, and generally a very cynical person. I am usually of the "glass is half empty" view. Thus, when I heard of this procedure about 5 months ago I was not very interested. My wife Marcy has very advanced MS, 100% bedridden, feeding tube, and unable to speak for almost two years. She is end stage. It was about a 17-year (with interferon/copaxone/etc.) road to this stage. Nothing the doctors had been able to do made much difference.

Something about this procedure nagged at me, though. I started reading up on it at sites such as this one, and decided to start the process. We live in San Diego, so I decided to go to Hospital Angeles in Tijuana, about 15 miles from where I live. It was a big pain to get a passport given Marcy's being unable to communicate (and with an expired driver's license), but we got it all together and headed south. Marcy was not cognizant of what was going on. I felt that even if something terrible happened, she could not be worse than she currently was.

The testing showed one jugular was 70% blocked, the other 99%. The latter required a stent to keep open. I did not want to do a stent, but felt Marcy had virtually no hope as it was, so it was not the more serious decision it might have been if she had been in better condition.

They had to knock her our for the operation, because you have to stay very still and she would move. Though she came through the operation fine, her breathing was adversely affected by the anesthesia (apparently it can cause much more mucous, and she cannot swallow). I had to rush her back to San Diego, and after five days in a local hospital her lung infection improved enough to go back to her nursing home. Up to this point there was no change, as she was very ill and asleep almost all the time.

However, right around Thanksgiving she suddenly began to speak! Not long conversations, but short ones. She is saying a few words every single day now. The nurses at the home are in shock, as am I. This morning I asked how she was doing, and she said, "I feel fine." I told her I was going to get a Christmas tree and would she like to see it, and she said, "Yes." Her eyes are bright, and she is following us around the room. When we ask her to smile, she gives us a beautiful smile.

To some people, such things are minor. They are not to me. I prayed about this a long time, and was very worried I was doing the wrong thing. but I was not. This is not a "placebo effect," since she had no clue what was going on. She may revert, she may get even better, she may suffer a clot or migrating stent and die. However, I know this: in her case, this CCSVI created a radical change in her condition, and within weeks. I am not a skeptic anymore.

I realize there are risks with this procedure, and for many the risks may outweigh the potential reward. However, if any of your friends or family members are near death as my wife was, I truly believe you should have them examined for this vein blockage. My home email is metalteam@cox.net if you have any questions of me (checked every few days, so if I don't get back to you right away please be patient).

Thanks to the doctors in Mexico who made this possible, to this site and others like it where people can freely discuss such issues, to Dr. Zamboni/Dake and others like them, and to the Lord, who said, "Ask and it shall be given you, that your joy may be full." Merry Christmas!

CCSVI Tracking Points to Excellent Results

With well over 300 liberated people self-reporting so far, the overall results that can be seen on CCSVI-Tracking.com are much better than I had even hoped for when I went to Poland to be treated last April:

Notice, especially, the great improvements in fatigue reported by almost 75% of people reporting.  I see that the Alberta government is finally thinking about doing some tracking of the results of Albertans who've been treated outside of the country (see CBC story and discussion).  Why isn't this being done nationally?  Why has there been no leadership from our federal government?  This should be a "no-brainer", but obviously that's not quite true.

Reminder about CCSVI Tracking

The site CCSVI-Tracking.com has more new graphs and ways to look at the data, so anyone who is interested in the results of CCSVI treatment can see the self-reported impacts of over 300 treatments on MSers.  I would also recommend that anyone who has been treated or is soon going to be treated register on the site and begin entering their data so that we can all get a better understanding of what happens to the symptoms of treated people over time.

Not all Euromedic CCSVI treatments are successful

Here is a report from my friend Inge who was treated in Katowice a day before me.  Note that for several reasons (including a botched stent placement in Katowice), she is going to Belgium to have her stent replaced:

My first Liberation treatment was in Katowice, end of April. I noticed immediate improvements. I could stand up straighter than before, longer than before (I could for instance shower standing up, something I wasn't able to for a long time already). I had a substantially improved balance (tested and verified by my physio) and more strength in arms, hand, legs and torso. I was able to walk a little bit faster behind my stroller, I could lift up my left leg more easily and so forth. I certainly had more energy.

For 2-3 months everything improved. I felt that the MS progression had stopped: for the first time I did not have that feeling any more that an avalanche was threatening me and I couldn't do a thing about it.

Then slowly, spasms returned. And I couldn't walk that easily anymore behind my stroller. I could hardly turn in bed. At first, I thought it had to do with the stress of renovating our house. And then I thought it had to do with staying in a cottage for the summer holidays and not sitting on good solid chairs. And then I thought it had to do with the amount of work I took on. Excuses, excuses. I had the sense that something was wrong, but things were inconclusive: I still had my balance, i still had my energy...so what?

On the 9th of November, an appointment with dr. R. Beelen at the OLV Ziekenhuis in Aalst Belgium gave me the answers. The doppler showed clearly that my stent in my right Jugular behind my collarbone was completely clotted. Looking at the operation images from Poland, Dr. Beelen saw that my stent was dented and broken in some places. (Already during surgery!) This and the description of my symptoms confirmed to dr. Beelen that my stent had been clotting up over 2-3 months since the first procedure. It takes time to fully close up, that is why my symptoms started to reappear so slowly. Strange thing, and difficult for me to comprehend is the fact that other symptoms remained: balance, energy were all good.

Dr. Beelen told me that the edges of the stent are cutting in my blood vessel, so there is an explanation for the slight pain I had al these months. Vessels do not have nerves, but the disturbance of the vessel creates all kind of reactions in the vicinity of the stent, so that is why I experience pain.

Dr. Beelen also told me that he would recommend a much tougher regime on bloodthinners than Dr. Simka does. Especially in my case, as I have the Leiden Factor V mutation, which is a higher risk for trombosis. He would for instance prescribe fraxiparine for 3 weeks instead of 1, use coumadin instead of the pavlax dr. Simka subscribed. And he wants everyone that has a stent under close supervision of the thrombosis service. They draw blood every week and adjust your medications when needed.

So that is what I am facing when returning to Belgium next week: Dr. Beelen is going to insert a new stent in my old stent, flatten the old one out and check the jugs and the azygos once again. I am very looking forward to having this second procedure, as I expect it to solve a lot of the problems I am experiencing now. Luckily, Dr. Beelen referred me to an organisation that is trying to get my operation covered by insurance: the Royal Doctors. Last week I was able to get a referral from a vascular surgeon in The Netherlands, and this will improve my chances on coverage.

What I learned from all this is: go local! It is very important to have good follow up care. A check by the thrombosis service, close contact with your GP. I am glad Dr. Beelen is also thinking about the financial aspect of things. because this will otherwise cost me another 6500 euro. We will see how things work out.

So next Friday the 17th is the big day. Hopefully everything will turn out fine. I will keep you posted.

take care and have a happy X-mas.

X

Inge

Dr. Hubbard connects MS to CCSVI theory

A very clear video explanation of the connection between CCSVI and MS: http://www.komonews.com/home/video/106175483.html

My mobility continues to improve

I saw my physiotherapist today.  According to her tests, my mobility measures have again improved. :-)

Alpha Liopic Acid anyone?

My friend Shelley sent me this:

I’m adding Alpha Lipoic Acid (ALA/LA) to my long list of daily supplements. Below are some interesting articles that support the use of it for MS sufferers.

http://www.thenhf.com/article.php?id=414

http://findarticles.com/p/articles/mi_m0FDN/is_4_9/ai_n9479468/

http://www.direct-ms.org/pdf/NutritionMS/AlphaLipoicAcidtrial.pdf

Do any of my readers have any long-term (or even short-term) experience with this?

Embry paints Dr. Freedman as unscientific and unethical

Ashton Embry uses the opportunity to respond to a recent letter from Dr. Freedman to a patient that basically dismissed the CCSVI phenomenon as "cultish" and Dr. Embry as a rock scientist who knows nothing about medicine.  In his reasoned response, Embry lays out the strong evidence-based reasons for accepting that CCSVI impacts on MS symptoms, and also conjectures as to why Dr. Freedman might want to take a non-scientific approach to fighting the idea. All in all, another good article from Embry: Embry rebuttal in Facebook,

Research doctors question make-up of CIHR panel on CCSVI

These researchers seem to be saying what many of us have said previously: that the make-up of the CIHR panel giving the federal health minister advice regarding CCSVI was seriously flawed.  Is anyone in the government listening? Click here to read their arguments.

BC/Yukon MS Society President calls for Minister to move on CCSVI

Thanks to my friend Shelley who found out about this letter today.  Does this mean that the MS Society of Canada is finally changing its stance, or is this a divisional president "pushing the envelope"?  Note that this comes on the same day that our friend Dr. Jock Murray was on the CBC saying that the New Brunswick government is wrong to support CCSVI "because other governments aren't supporting it yet".

Dr. Bill Code, Canadian doctor and MS expert, treated for CCSVI!

Hmmm... it looks like if you're an MS expert who has MS, you want to be treated for CCSVI: MS doctor treated for CCSVI.  Now, I don't wish MS on anyone, but maybe if more MS experts had MS, we'd be getting much more action on CCSVI treatment in Canada.

Seven months ago...

Today is seven months since I was treated in Katowice. So far I have maintained my significant improvements with respect to fatigue and modest improvements in mobility, dexterity and strength. As the big spread in last weekend's Globe and Mail suggested, this is no miracle cure, but the improvement in quality of life is a very big deal to most of us.

MS Society wants to see catastrophic drug program

While not saying anything against the New Brunswick government's decision to support CCSVI treatment, the president of the Atlantic division of the MS Society of Canada would have preferred to see funding of several new and expensive MS drugs first: http://telegraphjournal.canadaeast.com/rss/article/1325147.

Patient praises MS treatment despite Mostic death

Here is a very good interview with Dion Oxford, who was treated in Costa Rica at the same time as Mahir Mostik: CBC Video

Government promises $500,000 to help MSers

The new Tory government is following up on its election promise... the following was in today's Throne Speech:

Your government recognizes the financial burden placed on New Brunswickers suffering from multiple-sclerosis. Work will begin toward creating a $500,000 fund to assist patients seeking treatments.

Kudos to all those who worked to bring this issue to the attention of political candidates.  Now let's monitor how they actually implement the program.

And here Premier Alward tells why the NB government will go ahead with this despite the death of Mahir Mostik due to complications from CCSVI treatment: CBC Story

Cost of Follow-up in Barrie

A message from a friend today reminded me of something that I've known for over a month but never posted: as of October 15th, Barrie Vascular Imaging has been charging $250 for a Doppler ultrasound follow-up of CCSVI treatment.  It's only reasonable that they would charge for it since they are not being reimbursed by Medicare.

Globe and Mail columnist makes no effort to use facts

Andre Picard, a columnist for the Globe and Mail, used his column space (run next to an article on Mahir Mostic's death) to lambaste the whole idea of CCSVI treatment and basically call it a hoax (without quite using the word): see anti-CCSVI column.  While there can be arguments made for caution based on facts, Mr. Picard doesn't bother using such crude instruments, preferring to build his argument on erroneous information and a laughingly incomplete knowledge of CCSVI and the "liberation" treatment.

Does the Globe and Mail actually pay people to write such claptrap?  Luckily there are G&M readers who are a lot smarter and better informed than Mr. Picard and who have commented on the article to correct the biggest errors.  Sure makes you wish there really was a quality national newspaper, though.

Entire journal issue devoted to link between CCSVI and MS

Interesting reading: http://vaware.org/images/stories/pdfs/vaware_v2i3_lowres.pdf.

LOW risk does not mean NO risk...

Poor Mahir: CBC story - Ontario man dies.  That's sad, but what makes me angry is that "they had trouble getting a specialist to see him in Canada - 'They didn't want to touch him because he was done outside of Canada.'"

One year after: An Overview by Dr. Brandes

A must read for anyone who wants a concise but comprehensive chronological summary of developments with respect to CCSVI in the (almost) one year since CTV aired its story on Dr. Zamboni's discovery: Dr. Brandes' blog.

Dancing again...

I did a little dancing, again, at a friend's book-launching party in Campbellton on Saturday night.  I wouldn't have won any awards (my left leg is still slow to respond to commands), but at least I did it!

Tips and Cautions

Here is a word of caution regarding getting local follow-up if you are going to be liberated internationally:

CTV story. What really ticks me off is that there would be medical "professionals" who would refuse to do follow-up on Canadians who have gone abroad for treatment.  I would like to hear stories about that because, for now, until we can convince the Canadian medical system to start offering MSers the possibility of opening clogged veins at home, we have to travel.  Any doctor who is refusing to provide follow-up on the grounds that they have been treated abroad is acting unethically and should be reported to the profession.  Of course, it's also unethical to refuse treatment for a venous condition just because the patient has MS, as well, but let's deal with each of these issues separately... there's already a proposed legal challenge regarding not allowing people to be treated just because they have MS.

My e-mail to MLA Dorothy Shephard

Here (slightly edited)  is what I sent her (and my own MLA):

Dear Ms. Shephard,

A friend of mine, Melissa Robertson, was at the meeting in Saint John where Tim Donovan spoke and where you requested information from those of us who had already been "liberated".  I'm sorry I couldn't make the meeting, but here is my story:

I was diagnosed with secondary progressive in MS on Friday the 13^th of February, 2004, just a little less than two years after I had my first major symptoms.  Since that time, my condition deteriorated steadily and significantly despite being on Betaseron injections that cost over $20,000 per year (paid for by my Blue Cross, luckily for me).  By the fall of 2009, my mobility was reduced to the point where I was using a cane most of the time, my fatigue was forcing me to have naps up to four times a day and a myriad of other smaller (and not so small) complaints had reduced my quality of life to the point where the future looked extremely depressing indeed.  It looked obvious that, at the speed things were beginning to progress, I would  be in a wheelchair within a year and would almost definitely have to retire or go on long-term disability quite soon.  We spent much of summer and fall of 2009 thinking we were experiencing many lasts: the last time I would be able to sail my sailboat, the last time my wife and I could go biking together, the last time I could help out with chores at our cottage and so on and so on.  In November I went to present a paper at a conference in Madrid and my wife took some holiday time to come with me and help me with my travel.  Even with her help, we realized that my condition was such that I would soon no longer be able to make such trips, which made us feel quite low since, though we had travelled to and/or lived in many parts of the world over the last 30 years, there were still a lot of places we wanted to see or to see again.

When we got back from Spain on the evening of November 21st, we had many phone messages and e-mails from family and friends telling us we HAD to watch the CTV W5 story on a possible new treatment for MS symptoms.  I was quite sceptical (since being diagnosed I'd heard of all kinds of supposed treatments for MS), but when I watched a re-run of the W5 show, I was intrigued: it seemed, on the surface, to make sense.  Then, as I dug deeper and deeper into the theory, its background and the initial evidence, I became excited.  By the end of the first week of December I was certain enough of the possibility that I might have CCSVI and that having it treated might alleviate some symptoms and perhaps even arrest the progress of my disease, that I wrote to Dr. Simka in Poland, the only place in the world where treatments were available.  Within a few days of that, I was scheduled for assessment and treatment in April in Poland.  Nevertheless, I continued to research the CCSVI theory and also looked at the possibility of being assessed in Canada before my appointment (with no success, because there were no sites that I trusted knew what they were doing).

Unlike the experience of many other Canadians, I found my family doctor open to the possibility of this new theory, and even my neurologist was, while reticent, open-minded.

I was assessed and treated in Katowice, Poland on April 28th and 29th.

Since then, my mobility has improved so that I only use a cane on longer walks (on the advice of my physiotherapist).  My fatigue symptoms have all but disappeared.  I have started to wear button shirts again.  I am slowly starting to gain strength in my left leg and arm again.  My neurologist and my physiotherapist have both noticed a significant improvement in my symptoms, the first time I have had any improvement since I was diagnosed.  My wife and I are no longer talking about "lasts", but rather about "next times".

I want CCSVI assessment and treatment to be available to all New Brunswickers with MS: it will likely relieve the suffering of countless MSers and their families.  It will significantly reduce health care costs.  It is the right thing to do.  Unfortunately, until our medical system is prepared to take on this task, MSers will have to travel outside of the province and outside the country for this procedure.  I am happy to hear that your government is considering supporting New Brunswickers who need to travel to have this done.  It is the right thing to do.

...Ted

P.S.: I should have mentioned that it doesn't look like I'll need to go on LTD, and my retirement can wait for a while.

Report and Lobbying the New Brunswick Government

Here is a (edited) report and request from Melissa, who was liberated in Poland:

I (along with other liberated people) was to a meeting on Saturday in St. John. The Saint John Lancaster Conservative MLA, Dorothy Shephard, was there and was speaking about the possibility of government funding for the treatment.  With only a few weeks into governing they are still sorting things out.  However, she said,  this treatment was very close to their hearts and they are behind it.   The liberated people were there telling our stories along with Tim Donovan who was the guest speaker.   Listening and asking questions were 277 people who had MS or were the loved ones of MS patient. 

Dorothy asked us liberated people and patients waiting for assessment and treatment to send her our stories. She said she would get them to the right people.  You may also want to send a copy to your own MLA of your riding.

So, if you are a New Brunswicker reading this and have something to share, please send your stories to your local MLA and to: Dorothy.Shephard@gnb.ca

My physiotherapist says...

I saw my physiotherapist today and she says that my walking and my strength both seem to be somewhat better than the last time she saw me, about a month ago.  Perhaps that's due to my more focused exercise regime but, in any case, it certainly feels good to see things getting better rather than worse, as they had been until I was "liberated".

Contact for CCSVI tracking project

If you are having trouble getting signed up for the tracking project, please send an e-mail to margreet who is at ccsvi-tracking.com and is managing the site (I'm not putting the @ in there so she doesn't get spam).

How many New Brunswickers have been liberated?

In response to a request, I started figuring out the number of NBers who have been liberated as of today, and so far I know about or have been provided with information about 17 of us:

1. Me from Fredericton (Katowice, Poland)
2. TM from Fredericton (Frankfurt, Germany)
3. BBL from Fredericton (Frankfurt, Germany)
4. LD from Restigouche county (Katowice, Poland)
5. TD from Fredericton Junction (Albany, NY)
6. MR from Moncton (Katowice, Poland)
7. MA from Moncton* (Katowice, Poland)
8. djh from Fredericton (Sofia, Bulgaria)
9. Robert from Moncton* (Katowice, Poland)
10. JL from Moncton* (Katowice, Poland)
11. AL from Moncton (Albany, NY)
12. DW from unknown (treated: unknown)
13. Ron from Moncton* (Sofia Bulgaria)
14. HA from Restigouche county (Katowice, Poland)
15. JR from Moncton (Katowice, Poland) 
16. PM from Miramichi (Katowice, Poland) 
17. BH from Dorchester (Cabo San Lucas, Mexico)

The * indicate that, for some of these people, I'm making assumptions about where they come from.  Please let me know if I you know of anyone who has been liberated but doesn't appear to be on the list, and also let me know if you can fill in any of the "unknowns" in the list so that I don't do any double-counting in the future.

Dr. Kirsty Duncan's comments and questions in Parliament

Although she has been assigned to be Veteran's Affairs critic, Dr. Duncan continues to be a strong advocate for CCSVI clinical trials in Canada:

1. Question to the Health Minister
2. 40:3 Hansard - 66 (2010/9/20)
3. 40:3 Hansard - 66 (2010/9/20)
4. 40:3 Hansard - 68 (2010/9/22)
5. 40:3 Hansard - 68 (2010/9/22) 

It makes for interesting and valuable reading, especially that question to the Health Minister at the top of the list.

CCSVI Tracking Project Begins to Make Results Available

For the last several months I have been involved in a patient-led online tracking project for those of us who have had the liberation procedure.  Now they have enough participants (over 300, with 200 of these already treated) and number of months of results that they are able to make the information available to anyone who is interested:
www.ccsvi-tracking.com.  There are some fairly striking results, useful to those who are considering having the procedure done, or for those who have had it done, to compare their symptom changes to those of others.  However, in order to view graph results based upon user-defined criteria (for example: people over 40, only people with secondary progressive, only people with 6 months of results, etc) it looks like you need to be a member of the site.

Of course, this begs the question: why isn't the medical establishment and/or the medical research community doing this?

Also, if you have had the treatment and aren't entering your data, what are you waiting for?

Inventor of 'liberation' treatment for MS blasts skeptics in Alberta government

Zamboni makes his feelings known concerning the excuses (and misinformation) the Alberta government is using for a wait and see attitude to CCSVI treatment:  Zamboni Blasts Alberta Government

Komo News (Seattle) Stories about the Liberation Treatment

A well-done series about the CCSVI treatment by a Seattle TV station:

• Part 1 Video
• Part 1 Article
• Part 2 Video
• Part 2 Article

Raw interview with Dr. Andrews on MS

A very informative and balanced interview with an Interventional Radiologist in Seattle who has done some "liberation treatments" (though he doesn't like to call it that - he'd prefer it called venous angioplasty) and would like to do more of them: http://www.komonews.com/home/video/106178788.html?tab=video.  It may not provide much new information for those who have been following things closely, but is a good refresher and helps to provide perspective.  It is also good to hear someone say out loud that venous angioplasty is done every day and is FDA approved, so calling the treatment "experimental" or "risky" is a lie.

Wait for the blast in the last minute or so of the interview, where Dr. Andrews says that the Canadian federal government was absolutely STUPID for declaring that it was too risky to even start doing testing of CCSVI treatment.  Thanks to the MS Society of Canada, an inappropriately-chosen panel, a biased CIHR executive and incompetent federal health minister, the opportunity for Canadian CCSVI treatment is delayed indefinitely.

CCSVI Research: Iron Deposition and Chronic Fatigue

These three stories present research that should be of interest to MSers:

1. Two indicate that physical disability and brain atrophy in MS patients is highly correlated with iron deposition (perhaps caused by CCSVI?): Harvard professor of neurology Dr. Rohit Bakshi speaks on iron in the MS brain and Increased iron concentration and decreased volume of deep-grey matter are associated with increased disability in patients with multiple sclerosis
2. and the last one indicates that fixing venous problems seems to reduce fatigue symptoms: Is chronic fatigue the symptom of venous insufficiency associated with multiple sclerosis? A longitudinal pilot study.

Now I'm looking for the long-term research that indicates that we can hope for actual nerve and brain healing over the long term after CCSVI treatment... it would support and explain why I seem to be having additional incremental improvements in my symptoms as I approach the 6-month mark after my procedure.

MS patients claim vein therapy on taxes

You can certainly bet that I'll be claiming this... and fighting them in tax court if they don't accept the claim: CBC story.  I'm glad that I got a referral letter from my GP.

Last night I dreamt...

Last night I dreamed about my improved mobility... that I suddenly realized I was walking better, then I could jog, and then I could run... what a wonderful feeling it was!

Oh, and when I got up in the morning, my left leg was sore, almost as if I HAD been running! :-)

Shutting down treatment in Poland?

I've paraphrased the following that I received from a couple of different sources, and which was based on a TiMS posting (http://www.thisisms.com/ftopicp-139319.html):

A neurologist, Prof. Ryglew, and the director of the medical association of Poland have contacted the Polish ministry of health in an attempt to shut down CCSVI treatment in that country. If you feel that this is wrong, please write e-mails to ryglew@ipin.edu.pl and prezes@hipokrates.org and ask them to stop their attempts and state why you believe that access to CCSVI treatment is needed.  If you've already been treated, tell them of your experience.

Please send Rici (Ryszard Wiercinski, wiercin@gmail.com) a copy of your mail , so that he can collect them and use these messages when he meets with these people next week. Rici was the first person to get the CCSVI procedure done in Katowice (Poland)

I believe that this is a sincere request from someone who wishes to ensure that others have access to the same treatment he has had, but some on TiMS have questioned whether there is evidence to back up the allegation that these people are actually trying to stop the "liberation treatment".  However, just in case there is truly such a movement afoot, I have sent an e-mail that says that, though I hope I have been misinformed, I had heard that this was the case and that, as a person who has been treated for CCSVI in Poland, I believe that others should be allowed the same opportunity.

Follow-up in Halifax?

My friend Louis told me that when he was in Barrie the people there told him that a technician from Halifax is (or is soon going to be) getting training in CCSVI assessment and that we should soon be able to arrange follow-ups there, which will be a great thing for liberated Maritimers.

You can't always get what you want...

But if you try sometimes you might find
You get what you need

Well, I'm almost afraid to say it, but I think I'M EVER so slowly getting some more improvements... a little more strength, more energy, and my walking is a bit better... though that last one may be also due to the new exercises I've been doing to try to build up those muscles that have gotten weak as my walking deteriorated last winter.

Now if my left foot would only stop getting so darn cold at times that I can't fall asleep... *sigh*  I'm envious of those people who immediately noticed warmer feet after their liberation... I guess you can't have everything.

Saskatchewan to invest $5 million in CCSVI clinical trials

Saskatchewan will invest $5 million in "liberation" therapy clinical trials, see this CBC story.  Sort of makes me proud of being (originally) a prairie boy! :-)

Joan Beal's Assessment of research papers at ECTRIMS Conference

CCSVI was the subject of several papers at the conference of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) in Göteborg, Sweden this week.

Joan Beal (a champion for CCSVI research and treatment) has evaluated the various (and seemingly conflicting) research results reported there concerning CCSVI in her Facebook page.  It seems that the research papers arguing against CCSVI being a possible cause of MS were done by people who didn’t follow protocols and even used things like the valsalva maneuver to do their tests even though previous CCSVI research had shown that such results were meaningless.

It’s interesting that now the naysayers are no longer claiming CCSVI doesn’t exist and most seem to have grudgingly accepted that it is highly correlated with MS, but now they are trying to say that MS causes CCSVI… which is highly unbelievable given that CCSVI has been founds to usually be congenital.

Improvements may continue beyond 6 months?

Another Canadian "liberati" (dunkempt) reported on ThisIsMS.com that he was continuing to feel good and that:

We were told that they were seeing continuing improvements to the more "neurological" problems well after the 6-month mark as iron depletes and lesions close up.

I asked him who "they" were (perhaps the people in the clinic in Barrie?) and what evidence they had for it.  It would be great and hopeful news for those of us who have been "fixed" and have been assessed to continue to have normal blood flow.  Here is his answer:

Ted -

Yeah, me too; that is the critical thing, isn't it?

This was from an experienced vascular sonographer who had trained in Italy; my understanding was that this was an observation shared by those who work with liberati, not (yet, at least) the result of formal research. So, a very hopeful thing to hear - and it matches other "informal" comments I have heard from people who should know, but not a proven fact.

But there's probably not 150 people in the that 1-year+ group yet. And probably only, what, about 500 of us in the in the 6-month+ cohort? Still, I'm glad I didn't wait...

(I actually started with, "that's the critical thing, eh?" but then I remembered not everyone here is Canadian.)

-d

Should have waited for the new model?

It's just like when you buy a car or a computer or some other technology: not long afterward the new model comes along and you begin to get "buyer's regret".  Of course, there's no way that I would have wanted to wait for this new model of stent, especially since it is probably years from common use even if it does prove to work:

http://www.dailymail.co.uk/health/article-1319737/Soluble-stent-open-arteries-melt-away.html.  Thanks to Shelley for the link.

MS Society members 'break ranks' and try treatment

This is a real dilemma for some.  While they have put a lot of energy into volunteering for the MS Society and believe MSers still need the organization, these MSSC members are frustrated by its "Go slow!" (or go glacial) approach regarding CCSVI treatment and finally decided that there is too much evidence of symptom improvement to wait any longer: CTV news story and the video that covers the same story is here: http://www.ctv.ca/canadaam/.

Give Thanks... and Get Going

There are a lot of things to be grateful for this Thanksgiving and one of them, of course, is that I've been treated for CCSVI (by the most experienced team in the world) and all my blood seems to be flowing right (according to the clinic in Canada that is most capable of assessing me).  I've had some improvements (much more energy, a bit more strength and balance, a bit more dexterity)... so where do I go from here?

In my opinion, the best thing for me to do is to continue working hard with my physiotherapist and my exercise program in order to make the most I can of what I have.  Some of my muscles have atrophied quite a bit over the last few years as my mobility went downhill, and I'm going to work hard to try to build them up again.  Will it work?  Nobody knows, but it's highly unlikely that I'll improve much (if any) if I don't work at it.

That's true of anyone who is getting "liberated": having the treatment will, hopefully, stop the damage from proceeding, but we don't know if the neural damage will ever reverse itself and the treatment certainly will not, by itself, undo muscle atrophy.

Time to start the long, slow process of rehabilitation.

Who is selling snake oil?

It is too soon to tell how treatment of CCSVI will affect MS patients over the long term, but here is Joan Beal's rebuttal (on the CCSVI in MS Facebook site) to those who are characterizing CCSVI treatment a "just more snake oil":

We're seeing many neurologists and MS specialists responding to CCSVI research reflexively.  The common attack is
"This CCSVI angioplasty is no different than bee stings!  It is simply snake oil."
I think it's important for patients and caregivers to understand history when trying to respond to this claim.  You know me and history....(Rindfliesch, Putnam, Swank...)  I LOVE history.
http://www.facebook.com/note.php?note_id=234671112210

The term snake oil comes from the late 19th and early 20th century in the US, when you could actually purchase real snake oil to help your health.  Snake oil was claimed to have many healing properties and was sold by traveling salesmen, who put on shows with feverish sales pitches, hystercial claims, and miraculous healings which rivaled religious rivival meetings.  But these products didn't really do much for one's health, and soon the public caught on to the quackery and the term snake oil became associated with false medical claims.

When Dr. Zamboni discovered Chronic Cerebrospinal Venous Insufficiency (CCSVI)  he actually discovered a new disease.  Other researchers were noting how jugular vein valve malfunctions were related to transient global amnesia and hypoxia, but he found a connection to MS.   He came across this discovery quite by accident, while trying out new ultrasound equipment and scanning the neck of an MS patient--he noted venous reflux.  Something that was not normal, and had not been detected before.  He spent the next five years conducting blinded studies, writing research, bringing other doctors on board and learning all he could about this disease mechanism. He tried to address the blockages he found only in MS patients' veins with angioplasty.  It helped his patients.  And then he published his research, and I read it--along with patients, caretakers and doctors around the globe.

Angioplasty to relieve CCSVI is not a product.  It is not sold as a cure.  It is not quackery.  Angioplasty is used to relieve venous congestion and stenosis in many known diseases, including Budd-Chiari, heart disease, kidney disease and jugular insufficiency in dialysis patients.

Maybe we want to turn the question around to these doctors-- what is snake oil?   A product that makes unsubstantiated claims to heal, without a known mechanism.   I suggest that they themselves are the snake oil salesmen---telling their patients to take disease modifying drugs while they admit the cause of MS is STILL UNKNOWN.  Perhaps the CRABS are the snake oil?

In any event---over the years there have been procedures and treatments used to relieve MS symptoms and many have been touted as curative and called snake oil--they are not cures, BUT they have helped pwMS achieve symptom relief.  

What do bee stings, hyperbaric oxygen treatment and many other "alternative" treatments have in common?  They all address the VASCULAR SYSTEM.  Bee stings are vasodilators (via histamine release) and help blood travel throughout the body.  Venom from scorpions and other animals also does the same, and has been linked to relief in pwMS by many scientists.  Hyperbaric oxygen is easy to understand within the CCSVI paradigm...it is delivering much needed oxygen to a brain that is suffering from diffuse cerebral hypoxia.  Diet has long been touted as a relief for MS symptoms.  in fact Dr. Roy Swank completed many studies that were never deemed "acceptable" to the MS researchers.  But he showed long term remission in his MS patients, using diet and good nutrition alone.  I believe the connection to all of the above is found in the endothelium, the lining of our blood vessels.  You can check out my research on endothelial health at www.ccsvi.org under "helping myself."

So, when a doctor uses the snake oil phrase to describe Dr. Zamboni's research...ask he or she if they understand the irony of that comment.  

Who is selling the snake oil....really?

Report card in Barrie

Well, I'm just back from the Barrie Vascular Imaging Clinic and have "passed": all my blood is flowing properly in both jugulars.  That's the good news and "bad" news all together.  It's good to know that my veins are not blocked and that any healing that can happen should now be happening.  So, at least, I can hope that my MS won't get worse and that the improvements I've seen won't go away.  On the other hand, while restenosis would have meant another trip to Poland (or somewhere), now I can no longer hope that another "liberation" could result in even more improvements. Plus my wife will have to find somewhere else to buy her amber jewelry!  :-)

Oh, in answer to your question, Shelli, I sent my request for an appointment in August. However, it seems that people who have already been liberated are getting earlier appointments... perhaps because Dr. McDonald is hoping to get permission to do procedures in the near future.

Another good article in the National Post: Nostalgia for the days when the patients were ignorant

A few mistakes, but otherwise a pretty good overview of the battle between the medical establishment and the general public over how medical decisions are made: http://fullcomment.nationalpost.com/2010/09/27/shaun-francis-the-government-wishes-for-the-days-when-the-sick-knew-nothing/.  Thanks to Shelley for pointing me to this link.

What will they find in Barrie?

In three days I get to find out if my jugulars are still OK, thanks to Dr. McDonald's clinic in Barrie. I'm not quite sure what I'm hoping they'll find!

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My cold has made me weak

I've had a bad cold almost all week that has made me feel weak and made some of my symptoms worse.  I've just about recovered now and things are just about back to (the new) normal, but I'm going to try to save my strength for my trip to Barrie.  I fly to Ottawa on Wednesday to meet my wife, then we drive to Barrie for my follow-up on Thursday.  Do I hope that they find restenosis in my right jugular so that I can look forward to more and continued improvements in my symptoms?  While, as Dr. Simka says. "Pathology is never good!", in this case a pathology discovered would mean hope for even better things for the future.  It would probably mean a return to Poland, though, since things are moving so slowly in Canada.

Why the fierce attacks on MS therapy?

The article doesn't recognize that there is a difference between angioplasty and venoplasty, but the main arguments still hold very well:

VICTORIA TIMES COLONIST SEPTEMBER 24, 2010
Jody Paterson: Why the fierce attacks on MS therapy?
http://www.timescolonist.com/opinion/Jody+Paterson+fierce+attacks+therapy/3572370/story.html

Dr. McDonald's interview on Zoomer radio

This is a good, informative interview with Dr. Sandy McDonald: Zoomer radio interview.

New Brunswick Tories promise funds for liberation treatments

In answer to my e-mail query concerning the party's position on CCSVI, the local Tory candidate indicated in an e-mail reply a few days ago that they were going to do this, though he made it sound like it would be a fund set up for other things, not just liberation treatments:

http://www.winnipegfreepress.com/canada/breakingnews/new-brunswick-tories-say-they-support-unproven-liberation-therapy-for-ms-103550534.html. Interesting... maybe asking the right questions during an election campaign can help sometimes.  No word from the Grits, yet, concerning their position.

Chris Alkenbrack's Speech on Parliament Hill

If you didn't see this on the CCSVI Facebook site, here it is in its entirety:

My name is Christopher Alkenbrack. My wife and I have lived with MS since April 29, 1992. We weren`t even married when I was diagnosed, and I thought that this uninvited guest in my life would prevent my beautiful girlfriend Claire from committing her life-long love to me....but when I tried to let her go the following afternoon on April 30, 1992, she looked into my teary eyes and said something like, “You`re not getting away that easily !” We`ll celebrate 18 years of marriage this October.

My kids, Nick and Leah, have always lived with MS. If you`ve been in MS circles for any length of time, you`ve probably heard the expression, “I have MS, but MS doesn`t have me !” Well, MS not only had its grip on me, but on every member of my family. I`m not being defeatist – just realistic. It would be a lie to say that my kids didn`t grow up with many disappointments in their lives because of my MS, that my wife didn`t marry someone who held her back from bigger and better dreams, but we`ve had an amazingly fulfilled life despite my battle with this illness.

Over the years, I went through the many phases of MS, vision problems, balance and gait problems, numbness, inability to concentrate, overwhelming fatigue, bladder issues, from cane to no cane, back to canes, in a wheelchair....basically I`ve seen most of the stages this disease had to offer me. Some people are worse, some people never progress. That`s the insidious nature of this disease – we just never know where tomorrow will lead us.

Over time I`ve seen many hopeful new avenues of research for MS. In fact, what was sure-fire science a decade ago, is now only a memory in the annals of medical history. Like all of you, I`ve heard so many theories about the origins of MS, and as each new wave came and went, I became more and more blasé and incredulous that there would ever be any new developments in my lifetime. I had become resigned to the fact that my kids, and eventually their children, would just have to get used to a dad in a wheelchair as my disease continued to progress.

Three months after my chemotherapy treatment for MS, on the afternoon of Sunday, November 22, 2009 my life took a turn that I did not expect. A phone call from an excited neighbour saying, “Christopher, did you see that W5 show last night about the new theory on MS ?” I responded with little interest, thinking in the back of my mind that it was just another “hoax” – a word that we`ve all seen and heard far too often from the medical community since that time. Later that afternoon, I received an e-mail from my sister Susan, and I watched a clip of the show. Disinterested, I thought, “yeah, yeah, another theory on MS....what a waste of my time”. It was only an hour or so later that I watched the clip a second time, and my daughter, Leah, started to cry. She wrapped her arms around me and said something like, “Dad, my two dreams are going to come true.....we`re going to Italy, and you`re going to get better !” In my mind I questioned her real intentions, as I thought that, “Shouldn`t she have said, - you`re going to get better before she mentioned a trip to Italy !”

Well, that week, I was interviewed on CBC, and the process to my treatment for a vascular condition named Chronic Cerebrospinal Venous Insufficiency was jumpstarted. On December 1st, 2009, I received my first FB message from a person I didn`t know, and that started our journey to “Liberation Therapy”. To make a very long story short, my wife and I travelled to Katowice, Poland with Francine Deshaies from Montréal, where Francine and I were treated on May 18, 2010 for venous flow problems. Our symptoms of MS improved, though we still have bad days. In my case, I feel like I`ve turned the clock backwards by 5 or 6 years on my disease progression, something that no MS therapy has been able to do up to this point.

Some call it the placebo effect, others say it`s a hoax. I prefer to describe the results in the words of my daughter who said to me 2 weeks ago, “Dad, do you remember when I was in Kindergarten and you were in the hospital all of the time ? Mom used to let me take days off school, and come to the hospital and be your ‘little nurse’. “ She continued on and said, “Now that you`ve been to Poland, you don`t need me to be your little nurse as much anymore....I can just be your daughter !” Some of the most profound truths are indeed spoken out of the mouths of children, those who grow up suffering silently, the voiceless victims of a disease that robs so many people and their families of their potential quality of life.

I want to tell you about a “friend” of mine named Marcel. Marcel lives in Amherst, Nova Scotia, and he told me recently that he is the only declared case of progressive relapsing MS at the Halifax Research clinic. Marcel has been told that there is no available treatment for him. Marcel has a 5 year life-sentence imposed on him. Marcel`s only offer from the MS clinic was a prescription of narcotics that would allow him to cope with the pain of his disease as he slowly wastes away into an abyss of despair. Marcel made a passionate plea for his life to the Canadian Minister of Health – not for himself, as he knows that he is going to die from MS. He made this plea for his 9 year-old daughter. In his letter he writes: “From onset, my prognosis was 5 years, as the internal organs are affected most, with death resulting from asphyxiation or dehydration. I have a steady rate of progression and expect to no longer walk by this spring. Death will follow shortly after.” It`s not true that people don`t die from MS. Unless we speak up today for the Marcel`s in this world, they will become like the people who die weekly from this disease and remain forever forgotten.

I remember a conversation that I had in the fall of 2007 with a friend who had MS. Scott reassured me we would indeed be the last generation of people to suffer from MS. Unfortunately, Scott didn`t live long enough to have his treatment, as his memorial service was held on May 5th, 2010, the day we had our first cross-Canada rally to promote CCSVI awareness to our governments.
En tant que patients, atteints de la sclérose en plaques, nous avons l’obligation de nous battre pour nos confrères et nos consoeurs qui souffrent quotidiennement avec cette maladie qui enlève tranquillement leur qualité de vie. C’est un mensonge d’affirmer que les gens ne meurent pas de la sclérose en plaques. Nous avons entendu tout à l’heure l’histoire de Marcel, qui attendra la mort malgré la demande écrite qu’il a déposé à notre Ministre fédérale de la santé. Ce traitement lui sera surement refusé, et il laissera une famille dans le deuil et une fillette de 9 ans qui posera toujours la question, « Pourquoi n’ont-ils pas voulu aider mon père avec une intervention si simple ? » Le corps médical qui refuse ce traitement aux patients atteints de la sclérose en plaques devra répondre à ces questions pendant les années à venir. Regarder dans le visage d’un enfant qui a déjà souffert toute sa vie avec un parent atteint de la sclérose en plaques et dire, « Nous ne savons pas si ce traitement pourrait lui aider….donc, on l’essaie pas, on le laisse mourir ». Faire une chose pareille, c’est manquer toute forme d’humanité. Mais c’est ce qui arrive à nos enfants.

Dr. Paolo Zamboni may not be a saint, but he indeed is a pioneer – a professor of Vascular Surgery who has allowed himself to think outside the paradigm that encloses the minds of many in the medical community. Dr. Zamboni has exposed a CCSVI iceberg – and the tip of this iceberg is slowly emerging. We must not let those who want to push it down under the surface of the water take control of this research. We don`t have all of the answers, but we have a glimpse of some of them. Researchers world-wide like Dr. Sandy McDonald, Dr. Salvatore Sclafani, Dr. Gary Siskin, Dr. Marian Simka, Dr. Michael Dake, Dr. David Hubbard, Dr. Mark Haacke (Pronounced Hay-Kee) and many others are underneath this iceberg, with the thousands of MS patients, trying to push it to the surface and expose it. Every effort that you make, will push forward the research. As a community that has learned to network together, we have thrust MS research to the forefront, and we will no longer take “NO, JUST WAIT A LITTLE LONGER” as an appropriate answer either for us or our friends who are getting sicker or dying each day from the effects of this disease.

It is discouraging to be in the middle of this turf war of some of the greatest medical minds. It is confusing and frustrating as patients with a chronic, life-long disease to see the division in the medical community, and how this separation creates unnecessary waits to potential treatment. It causes outrage to see an organization that exists for us that is not adequately defending this new avenue of research into CCSVI. I am livid when I see the wrongful manipulation of information that is taking place.

Nous ne devons jamais perdre espoir. Nous devons croire que nous serons la dernière génération de personnes atteintes de la sclérose en plaques.

We must not give up hope. We must continue to march forward. We must believe that we will be the last generation of people ever to hear those words that resound in our ears as a life-long sentence of uncertainty and despair, the words that I heard on that day back in April of 1992 - “Mr. Alkenbrack, you have Multiple Sclerosis”.

THROUGH FURTHER RESEARCH INTO THE AREA OF CHRONIC CEREBROSPINAL VENOUS INSUFFICIENCY, WE WILL INDEED END MS.

It`s not true that people don`t die from MS.
Ce n’est pas vrai que la sclérose en plaques ne tue pas !
Wake up Canada.
Réveillez-vous, Canada !
Wake up Multiple Sclerosis Society of Canada.
Réveillez-vous, Association canadienne de la sclérose en plaques.
Wake up honourable Health Minister.
Réveillez-vous, honorable ministre de la santé !